This topic revolves around a decision many people face after having a total colectomy: whether to proceed with a Stage-2 J-pouch construction or to stay with a permanent ileostomy. A 60-year-old individual, who has been living with psoriasis, arthritis, and collagenous colitis, is contemplating this choice. They had a total colectomy and end ileostomy five months ago, which improved their quality of life significantly, but they find the pouching system bothersome at times. They are considering a J-pouch surgery scheduled for April and are seeking advice on whether to go ahead with it or stick with their current situation.
Here are some points to consider:
1. General Decision-Making:
- The decision is personal and should be based on thorough research and weighing the quality-of-life trade-offs. It's important to have open discussions with your surgeon.
- Request specific outcome statistics for patients with similar immune disorders and colitis subtypes. It might also be helpful to speak with someone who has had a successful J-pouch experience.
2. Surgeon Feedback:
- Dr. Feza Remzi is highly regarded, with a strong background from the Cleveland Clinic and now at NYU IBD Center.
- Another recommended surgeon in NYC is Dr. Dmitri Khaitov at Mount Sinai, known for his laparoscopic approaches.
- For more information, you can read about Dr. Remzi’s program at NYU.
3. Medical Suitability Concerns:
- Some doctors advise against a J-pouch for patients with certain types of colitis or complex immune conditions, suggesting a permanent ileostomy might be more successful.
- One person was given a 50/50 success rate and noted that many "successes" require ongoing antibiotics for issues like pouchitis or cuffitis.
4. Negative Personal Experiences:
- Some individuals experienced severe complications like cuffitis/pouchitis, nighttime leakage, and frequent accidents, leading them to revert to a permanent ileostomy, which improved their quality of life.
5. Positive Personal Experience:
- One person with a J-pouch since 2017 reports a positive outcome, with manageable bowel frequency and the ability to eat most foods. They use a daily fiber pill, probiotic, and barrier cream, and have minimal issues with gas.
6. Practical Questions to Ask Your Surgeon:
- Will your immune disorder affect the remaining rectal cuff?
- What is the expected bowel frequency for someone of your age and condition?
- What is the likelihood of developing pouchitis or cuffitis, and what are the long-term medication needs?
- How will this impact your work, especially if bathroom access is limited, and what accommodations might be possible?
7. Information Resources:
- Visit www.jpouch.org for an active forum, though be aware that many posts are from people seeking help for complications.
- Consider starting or searching for threads that consolidate "J-pouch stories—good, bad, ugly" for a balanced perspective.
See full discusison